Greetings From A CML Alien
I’ll just come out and say it. Sometimes, I feel like an alien. I’m not saying I’m green and have antennas although sometimes I do get “green around the gills,” if you are old enough to know what that means. Gills? Never mind.
I’m using alien as a term for someone who feels like they are living on another planet—a place where others do not understand our language, experiences and behavior. Things like “TKI,” “CML” and “BCR-ABL,” fly out of my mouth as easily as “hello, how are you?”
Sometimes, I toss out those terms that are a key part of my existence now and I know other people have no idea what they mean but are too polite or disinterested to ask. See, it’s a secret language that we CML folks converse in. Random scratches, rashes, weird twinges in our stomach, knees, legs, you name the body part and pain has suddenly shot through it at one time or another for no apparent reason. I was recently on a video call and was asked, “What’s wrong with your face?” “What do you mean?” “Well, you have a rash all over your face, throat, and neck all of a sudden. It wasn’t there a minute ago. What did you do?” “Do? I’m sitting here talking to you,” I replied, carrying on with the conversation with only a “yeah, I get rashes a lot” as means of explanation.
Read the room, please
Then there are the “please read the room moments.” I’ve been living with chronic myeloid leukemia for six and a half years now and there are times where I feel like I’m operating in an alternative universe. Try as I might, I can no longer relate to certain things other people are saying. That’s when I’m an alien among humans.
God knows I wish people treated me “normally,” now which most don’t, but on the other hand, it might be dandy if a little judgment was used when speaking about certain topics.
Exhibit A: “You have no idea what it is like to live in pain.” BEEEEEPPPPPPP wrong answer.
Exhibit B: You are popping a pill each day? So what, I have to take a vitamin (substitute antibiotic, probiotic, etc.) BEEEEEEEEPPP Let’s swap. You go first.
How about we don’t talk so much about medical subjects. I’m touchy. But if we do, let’s recognize that we all have our pains, aches, issues, and gripes and it is not a contest to see who is worse off.
Other things I can’t relate to are when “problems,” like not getting a straw in the drive-thru or rain in your hair or whatever take center stage. Those are silly examples but I hope you get what I mean. Let’s have a conversation, of course, but please... priorities. Is it really a big deal?
I’ll tell you what a big deal is… being an alien living with incurable blood cancer waiting for the other shoe to drop. Or, test results bopping up and down like a jack-in-the-box. Consulting the eight ball—future is fuzzy. (That’s probably way too many toy references young people won’t get... proving my alien hood further!)
Recognize where there are solutions
I’m sorry, I can’t relate to things that are fleeting and have an easy solution anymore. Go back around the drive-thru or drink from the cup? Remember to wear a hat? Have a headache from staying up all night partying? Shut the shades and take a nap. Need a tooth pulled? Go to the dentist. Done.
It’s during times like these that I actually find myself zoning out into that extraterrestrial universe. It’s like I’m watching myself listening and unable to “get it.”
Finally, my alien behavior puzzles others. The side effects are brutal as time goes on, making it a genuine struggle to function. Period. That’s why it’s become a big deal if I can drag myself out of the house, get in and out of the car and do even one big task in a day.
If I say I’m really tired, I mean it. If I say it is a bad day, it is. Please don’t ask me why or get impatient if I’m not moving fast enough for you or trotting up and down stairs like Rocky. Please don’t expect a happy-go-lucky Pollyanna persona each day. I’m trying my best to cope with this “new normal,” and it takes time. Yes, my behavior may seem weird to you or different from the past, but that’s just the way it is now. Far out.
Don’t worry, I’m not going to capture you and lure you onto my CML spaceship. Just wanted to tell you a bit about life on the blood cancer planet.
Have you met another blood cancer patient?